Laughing till you puke

A rough road

I am writing this post today because not only is it the first time I've had two hands to type, but because it feels as if the sun is shining and maybe, maybe? Kyler has turned a corner. The above picture is his third "coming home from the hospital" picture from last week. We are hoping the third time is the charm.


For five and a half weeks, our lives have been consumed with doctor's visits, sleepless nights, medications, worry, hospital stays and screaming baby. But they have also been filled with hours of sacrifice, countless acts of selfless love, prayers, and food given to us by so many dear family and friends literally carrying us through these rough weeks.



I want to write this post in hopes that these things are of the past, but Dave warned me that just because we might get a 40-degree day in February, it doesn't mean we can pull out the swimsuits and shorts yet because most likely there is a lot of winter left. The above view is what I spent 14 days staring at. The Children's hospital is building a new facility. I sure hope to never see the finished version.


I have sat in this uncomfortable chair way too long staring at the above view. (Yuck, I do look tired!).


This sweet baby has endured so much more in his first 2 1/2 months than ever seems fair. He is a trooper though. I am certain that it was no accident that he was given the trait of having a fighting desire to eat. This trait that I noticed from day 1, has truly helped him through his RSV and surgery. Because of this, he has gained weight through all of this!


This is the drive Dave and I have made way too many times on the freeway into downtown where the hospital is.

For the past week, since we have been home from the hospital, Kyler has spent hours and hours crying, had diarrhea, and the longest he slept at a time (until this weekend) was 20 minutes. A few nights he cried the entire night. We thought this was probably due to the oral steroids and high-powered antibiotic he had to be on, but then it continued several days longer than the medications. Then he broke out in a rash, so maybe he had another sickness on top of it all? He doesn't sound great yet, but he sounds much better than he did. So, for this minute, we are feeling better. Thank you. Thank you. Thank you to all of you for everything you have done for us. I know now how loved I am and how sometimes we just cannot do it on our own. I love you all!

Aubrie turns 7!

My cutie Aubrie turned 7 (a month ago!). She is a smart little cookie and a deep thinker. Sometimes these two qualities are a rough mix for her because she tortures herself worrying about things. But she also constantly surprises us with her connections and deep thoughts. Some examples of this: she told us she thought 'The Grinch' must be Jewish since he doesn't like Christmas! One day, she told me how she thought it must have been hard for me when my parents got divorced, but she's actually glad for it because otherwise we never would have had Toni and Lauren (my stepsister and half sister). She often has deep discussions about books she reads and also has impressively creative ideas and projects. She is in love with art projects and her American Girl dolls and books. This is why she chose the theme of a doll craft party for her birthday party.


It is impressive how seven little girls can so intensely work on craft projects for hours and not want to do one other thing! It makes for an easy party! They made necklaces for their dolls, headbands, and decorated little bags for them. Notice the array of dolls they brought (sitting on the couch!).


Aubrie loves school until she feels like she isn't getting enough mama time (which has happened a lot lately with Kyler's health issues). But apparently she does well at school. Her first grade teacher recently emailed us describing her as "happy and silly and works hard. I can't ask for a better student!" Aubrie has many talents and one of them we have learned recently is that she is an awesome speller. She has many friends and is a great sister. We love you Aubrie and are so proud of you!

Surgery for Kyler

Since just after birth, Kyler has been making very squeeky sounds when he breathes. He also has struggled eating and sleeping. The doctor's clinically diagnosed him with Laryngomalacia and Acid Reflux Disease. The doc wasn't worried about it because almost always it is a benign condition that they outgrow by 18 months.

But with Kyler having such bad RSV and the doc's at the hospital feeling like he needed more testing, I got a strong feeling he needed to see the ENT and have a test done that would let us know exactly what his airway was doing. My doctor listened to me, so we did the test, and we found out last week that his airway is so small and tight that the ENT thought he was one of the very few kids who needed surgery to fix it.

She wanted to wait a couple weeks to have him totally over the RSV and see if his airway looked any better. But since then, twice he has turned a blue/grey color while he napped and had an episode where he was really struggling to breathe, and we had to call 911.


Because of a dramatic-filled weekend with trying to get an apnea monitor, him starting to get a new cold, and his struggling to breathe episode, I took him to the pediatrician yesterday morning to try to have my questions answered. She spoke to the ENT, and the ENT called and said the surgery has to happen today or else he will have to be hospitalized until we do it to keep him safe.

So Kyler is scheduled to have his Supraglottoplasty surgery today to open up his airway. It is a guarantee two nights in the hospital (one in the PICU) and a possible need for a breathing tube following the surgery. The biggest risk is scar tissue or the possibility of a tracheotomy. The pediatric surgeon has done about 100 of these and is confident that all should go well. The procedure lasts about 15 minutes and they open up the airway with tiny scissors and a CO2 laser.

My biggest worry about doing it today is that it he has this cold. They assured me they would look him over before hand, and if they thought he was too sick they wouldn't do it. The doctors feel that a monitor is not safe for him, because they aren't worried he's going to stop breathing but more worried if the air is going through or not.


I think he is in good hands at the Children's Hospital with these doctors, but I hope you will remember him in your prayers in the next few days. Specifically, that they will know if he is healthy enough to undergo the surgery and of course that there be no complications. My other concern is that he can't eat for five and a half hours before the surgery (this kid is screaming and ready to eat every two hours). It is scary to put him through something like this when he is so little, but it has also been painful seeing him struggle so much to breathe, eat, etc. Every cold he gets could mean more hospital or 911 calls, and that's just not a good way to be living!

With all the love, concern, prayers, and big and small acts of kindness to me and my family, I have felt my Heavenly Father's abundant love. I feel so blessed, so loved, and I am so grateful to know we have so many people to count on and help us through hard times. We love you and will once again try to keep you all posted. Thank you for all you do for me and my family!